Pancreatic insufficiency ..No cause ?

I was diagnosed at 51. 2 elastase tests were 136 & 76. Abdomen MRI all clear (TG!). I average 6-7 Zenpep pills (25,000 USP) daily. With no other related issues, I am asking doctors to run additional testing. I will have a vitamin panel done for A, D, E, K + amylase and lipase.

I started having severe diarrhea last September after a bout of food poisoning. In the course of identifying what was going on, my pancreatic elastase tested severely low at 34. I was also diagnosed with microscopic colitis and an abdominal CT showed some pancreatic abnormality but nothing to cause concern. I have never had pancreatitis or any other pancreatic disorders. I'm on Creon for the low pancreatic enzymes and it has been great - I suspect I have had low enzymes for years and the colitis just brought it all to a head.

A year ago, after months of testing, I was diagnosed with EPI and my enzyme reading was 129. I take CREON with every meal and what a difference that has made. I lost 40 pounds and am also pre-diabetic, so it is difficult to gain/maintain weight while following a low carb diet. My search began with a vague pain in the upper right quadrant in the liver/pancreas area. Ultrasound, MRI, MRI with contrast finally showed atrophied pancreas. Because my symptoms were not daily, or even weekly and weren't dramatic, I had to stay with this, as every test came back negative, but I knew something was wrong. Finally, the stool test (last test I had) showed reduced enzymes and I started on the road to managing this disorder . I count my blessings, as this diagnosis could have been much worse and the stress and anxiety of awaiting test results was horrible. If you know something is wrong with your body find a doctor who will work with you until you find what it is. I don't think this disorder is common, so it isn't a "go to" diagnosis such as common gallbladder or stomach issues. Good luck with your treatment and diet. I now cook almost all my food and I'm better for it. Eating out is an occasional thing and my beloved sugar is a thing of the past.

I’m 65, and was diagnosed with EPI after suffering with occasional bouts for about 1 1/2 years. I was put on ZENPEP in Nov. and was doing ok for a while. Over the past month I’ve been getting worse again. In the past 7 months I have lost 60 lbs. I don’t mind that because I was over 300 lbs. Not the best way to lose weight since I am also losing vital nutrients. If you have not been to your doctor, make sure you get a colonosopy and endoscopy to rule out Crohns. My sister has Crohns and the symptoms are almost identical.
My doctor also said nothing other than to take 2 pills before each meal. Tonight I tried taking 1 at the beginning of the meal and one at the end of the meal to see if this helps. I do feel better tonight. I generally only eat 1 meal a day, maybe 2 if I get hungry. Most of the time I am too tired and in pain to eat more than that.
I do have a question for anyone - does anyone else get chills easily after a bout? I take iron twice a day because of anemia, but I’ve been great for the past few years because of the iron. Now, once again I am cold all the time. It gets worse after a bout of diarrhea. Anyone else have this problem?

I was diagnosed with EPI six months ago, extremely low lipase. The Zenpep worked wonders but because of the expense I began a search for a pancreatic enzyme with similar ingredients. I am now using VITAL Nutrients Pancreatic Enzymes instead of Zenpep with no problem. $38 dollars compared to thousands. I order it from Amazon.

I'm 55 and have had pancreas issues for over 10 years. It started with extreme pancreatic attacks that felt like I was literally dying. This stated a few years AFTER I had my gallbladder taken out. These attacks are extreme sharp pain in the upper abdomen that would come in waves, so bad that I'd pass out in a couple of cases (vagal). I learned to recognize and manage the pain when it'd start and this wasn't properly diagnosed as acute pancreatitis (non-alcoholic) until a couple of years ago when my blood work was done during a crisis and the very elevated levels of AST, Amylase (304!), Lipase (1544!!) were seen. My last episode was a little over a year ago and landed me at urgent care. What's weird is that the attack would happen then go away like nothing and I'd feel perfectly fine.

A month ago one morning, I started having diarrhea pretty bad and was chalking it up to some sushi I had the evening before but it kept going everyday and I noticed that it wasn't your typical food poisoning or upset stomach type diarrhea. So after seeing if it would pass after a week I had things checked out at urgent care and they referred me to the ER for a CT in case there was bile duct obstruction. There was none and everything looked clear and normal. It took another week plus to see my GI and he put me on Creon (36000 ), one pill before each main meal. It did help a bit in reducing the frequency of trips to the bathroom but wasn't making anything "normal." He increased the dose to double that for meals and 1 pill for snacking. I take 7-8 a day, and still, things aren't getting a whole lot better.

I welcome any advice on dieting with EPI. I haven't lost any significant weight, just 2-3 lbs from not eating like I usually do and staying away from anything excessively fatty but I'm finding it difficult to find foods that really help.

I have EPI and taking Creon. I went to a dietician who put me on a 1,400 calorie diet, can have only 30 grams of fat and 25 grams of fiber. The grams add up quickly. I am ok with breakfast and lunch but find it difficult to figure out fat and fiber grams at dinner. My GI doctor was no help with diet. If Ihave a serious bout of diarrhea Itske half an immodium pill snd that works for me. Have lost 12 pounds. I have trouble processing fat. Also no alcohol snd would like to havea glass of wine once in awhile.

I am 38 and I have had chronic diaherra for awhile and have googled for an answer. My story was i got to the point where I couldn't eat and lost weight quickly. Went and got a colonospcy and it came back clean. I sucked it up and went to the ER and found an inflamed appendix. Had that removed and issues got better but still remained. Finally got diagnosed with EPI after a few stool test. My CT Scan is showing no issues with my pancreas. My GI Dr is saying they are seeing increase of younger people with this likely due to our diets.

Hi. I’m in my seventies, eat a relatively healthy diet, and I have EPI. Sometimes, organs just stop working properly. I, too, would like to know exactly why, but I’m extremely happy to have figured out my problem after two years of suffering every time I ate. I am on Zenpep, now, but have discovered that in order to remain painfree and diarrhea free, I have to eliminate regular alcohol and coffee consumption from my diet.
Good luck! Btw, some patients have excellent results with Creon, also.

Hi! Sorry you’re suffering so much — it’s terribly frustrating! The only prescription that works perfectly for me is Zenpep, which is the most expensive one for EPI (no surprise; right?). My insurance required that I try all the less expensive ones for at least 30 days each before they approved Zenpep.